Profilatic mascetomy

Oh I spelt it wrong!!!

Hi Kel,

I had a mastectomy in June and next month I am going to see my surgeon for a referral to a plastic surgeon for reconstruction.  At the same time, I will be having the other breast off.  I have not had any genetic testing and do not know if there has been anyone in forebears with it as they have all died.

I am having it to reduce my worry about it coming back in other one and also as the one I have left is large and saggy and it would be hard to match up.  There have been many women on this site who have had a breast reoccurance and that scares me.

My surgeon says that I will probably have a DIEP flap which is a long op.(10 hours or more for two breasts)but he says they have been getting good results and is happy to support my decision.

I have heard that medicare only pays for cancerous one and that health funds dont give much back but have not enquired yet.

Julia

Hi Kel

I had a bilateral mastecomy and reconstruction (by expanders) in April last year.  The lump I found was identified in one breast,  however I elected to have them both removed as my mum is also a bc survivor and she only had one removed.  She is 7 years remission - which is fabulous, however she still stresses about it returning .  My choice proved to be the right one for me.  The pathology post surgery was that there was another small tumor in the same breast 2mm, and there were pre-malignant cells in the other breast.  I have had no regrets whatsoever.  But this is a very personal choice, it is not for everyone. My relationship with my old sagy breasts was not fabulous and I shed no real tears about losing them.  I think that seeing my mum (who had chemo and has not been reconstructed) contributed to this. I was 40 when diagnosed and my cancer was stage 2 and there was no lymph node involvement.  I have been so very lucky to have escaped chemo - however am on Tamoxifen for 5 years.  At the end of this month is my first anniversary since diagnosis.   I can't believe almost a year has gone.  I am fully reconstructed now and are very happy with the result.  I wish you all the best on your journey.  I am happy to answer any questions you may have - just ask

Hugs

Liz x 

Thank you for sharing your thoughts,your write it is a big decision but I share the same fears as both Liz and Julia feel.i was diagnosed when I was 37, I'm now 39. There was no definite lump just a gut feeling on my behalf. My first mammogram didn't really show anything, the doc said I'm 98% sure it's nothing. But my gut still didn't feel right so I flew to Adelaide " I live in the country" and their machines r more advanced. So that's how it all started . I to worry about it coming back in the other breast. If I can b really brave and honest with myself, I want to take the other off when I have a recon. I said to my husband, I dont want to have another mastectomy but I don't think I can live with it on !!!! I did have radiation on my bc side and chemo and it quickly found its way to two lymph nodes. My cancer was tiny with a lot of in situ. No genetic factors but pos to both hormones. I have to have a lat dorsi done on that side as I had rays, which is unfortunate that they have to cut into my back :( on the other side I was hoping they could just do a expander then a implant!! Do u know anyone that has had that done??? Don't really want both muscle gone!! Any thoughts would b good:) I'm the only 30 something with bc here so don't really have anyone to ask! I have two most beautiful little boys that I think I owe it to me and them to try and eliminate as many risks as I can.xxxxxxx kel

Hi Kel,

Thank you for your post as I too am thinking about having my other breast removed.  I was diagnosed in June last year (at the age of 34) and had an immediate mastectomy and following this surgery I had my lymph nodes removed, as cancer was detected.  I went on to have 6 sessions of chemo, 5 weeks of radiation and am now on Tamoxifen.

My next goal is reconstructive surgery.  I am giving my body a good 7/8 months break (I finished radiation in January) and hope to have my other breast removed and a double reconstruction at the same time.  I have 2 little girls and I also want to eliminate the risk factor.

I know exactly how you are feeling right now - so many decisions.  I have started the gene testing process and will find out my results around July however despite the results, I know that I will still have my other breast removed.  It is more out of fear than anything else - just don't want it to come back ever!

Thinking of you

x

Hi girls. I have been back to my surgeon this week and in 2-3 months will have my second mastectomy and immediate reconstruction. I don't have family history but like liz I had pathology of my right breast tissue show 2 other lumps that hadn't been picked up by MRI etc. So I feel safer having the other side removed. I have been told tissue expanders is my best option but I guess those decisions will be made once I talk to the plastic surgeon.
I too am 37 and have 3 kids 8,6& 3 so I don't want this b... of a disease coming back! I was lucky in that it hadn't got into my lymph nodes so didn't have chemo or rads and am on tamoxifen for 5 yrs.
Goodluck with your decisions.
Love Sam xxxx

Hi Sam , thanks for your thoughts I just love reading what other women in similar situation are thinking. I have to have a lat lorsi dru to the rays. Unfortunately I was asking to have ultrasounds for quite a few yrs as I felt there was something off. The machines didn't pick it up as it was in situ and they couldn't see it. Even up till my diagnosis they were saying 98% sure it was no. When I was in my 20's and 30's I used to say to my girlfriends, if they ever find anything I'm getting them cut off!!! Never really believing it would come to this.i know if I can go through with it I will be able to " take a breath" I'm sure u know what I mean. It will also give me the opportunity when my kids a much older, to tell them that I done every I possibly could to make sure it wasn't coming back. Love kel xxxxxx

So what I was saying is the doc said I had had it for around 10yrs and eventually turned to a grade 3 vicious little thing that very quickly got out and got to 2 lymp nodes. :(

Hi Ladies,

It's encouraging to read from you as I am in the same boat too (I think it must be a very big boat!). I was diagonsed in August last year and have had a mastectomy of my left and chemo and radio and am now on Tamoxifen. My mum died from secondary breast cancer two years ago and my grandma 10 years before that from cancer too. I have had the genetic testing and came up clear for the two they test for but it's my gut feeling that theres some sore of familial link.

I have decided to have the right one removed too. It'll reduce my risk to zero, and I don't see much point in it hanging around if the other side doesn't match. I currently have an expancer in the left and it get pretty uncomfortable. Consequently I am booked reconstructive surgery on 16th July with Dr Pennington in Sydney. He will do a DIEP for the left but I don't have enough fat for him to do the right too. I will need to have an implant on the right. I feel funny having different techniques on both sides but at least I will minimise possible risk of capsular contracture on the left. 

I'd love to hear how you all are. I am 38 and have four young children.

Heather

Hi girls, I go back to plastic surgeon (Dr rod cooter who was on the project tonight talking bout the implants that have the industrial grade silicon) on Fri this week 1st June to tell him that I want to go ahead with left prophylactic mastectomy and immediate bilateral recon. Am going to do the expanders and implants option and not the lat dorsi as he suggested. Hope I am making the right decision!
How does it feel Kell that you now have a date for the surgery? I am nervous about it all actually...not looking forward to losing my last original boob...I quite liked them!
Goodluck for the surgery.
Love Sam xxx

Hi Ladies, I too have had a prophylactic mastectomy and reconstruction at the same time. Because a mammogram failed to pick up my BC, I felt it would be hard to fully trust a mammogram in the future, so after one mastectomy, and chemo, I went back 9 months later to have the second one off and have tissue expanders added. I never had genetic testing, as there is no breast cancer in our family, but still didn't want the risk of getting BC twice. You only have to read these blogs to know that many, many women get BC more than once. I am very happy with my decision, and the results of my reconstruction. Love Chris xx

I'm terrified :/ I wish that it wasn't such a long wait , 16 weeks all up. I don't care about losing my other one it will head south soon anyway.if when I woke that was it I think it wouldn't feel so big. But it's really the start of it all. My breast is to dense to see through it so the docs would have to do a MRI every yr instead of a mammogram.im not sure how real they will look , I've read about having fat injections at the end to make them appear more like a real breast.i did read a great quote a few mths ago from a lady that went through the same thing. She had a tee shirt made that said " Yes they r fake my real ones tried to kill me" I thought that was funny. Keep in touch girls xxxxxxx can't really end with " save the Ta Ta's " ;)

Hi Kel

I haven't been on the site for a while and have just seen your post.  My experience after having had precursors to cancer, first in one breast then the other (and a strong family history) was that having both boobs removed and expanders placed and finally (a year and a half lafter the expanders) implants was really a HUGE relief.  Now I see the surgeon once a year for a quick exam, no more mammograms.  I waited a year for the initial surgery and as the time drew close to my BMX I tried to keep really busy and not to think about it.  I knew I had made the right decision for me. So please try not to worry too much, I think you're doing the best thing by doing all you can to make sure you are free of disease. Will be thinking of you on July 23.  Best wishes, Sarah

Hi Sarah ;) do u have to have expanders in for over a year ?? :/

Hi, I had my expanders for just 3.5 months. This was delayed for a few weeks due to repeat surgery for a massive haematoma that devloped at 3 weeks. This put my expansions back by 3 weeks, hence the delay. I was a private patient, and chose my times, with guidance from my Dr. He wanted me to wait for 6 to 8 weeks from the final expansion, to enable the breast tissue to get use to its new shape. I have had no issues since exchange, and it is alot more comfortable once the expanders are out. Love Chris xx

Hi all again
Heather and kellie just wondering if you girls are on Facebook in the 'young women with breast cancer group'? It's a secret group which means no one can see it unless you're a member. It's cool for this kind of discussion and some women have put up photos of their reconstructions. If you're interested let me know as I think you need someone to invite you.
I saw my ps and I'm booked in for sept 11...the day before I turn 38!! What a way to spend my birthday!
Love to you all
Xxx

Hi Sam, that's sounds very exciting:) and sneaky :) I would love a invite. Look for Kellie Niarros :)) thanks . And thanks Chris for you're info, I never remember to ask all the questions plus were I live" country" there is no one else that has been down the same road in their 30's. So by your times I'll have some boobs by summer:) then I can finally chuck out my groovy high neck cosy. Kellxxx

I'll organise it asap heather and kelli. Will keep you posted. X

Kellie I think I've just befriended you on Facebook...or maybe a different kellie niarros! Lol. Heather can you maybe befriend me as there are lots of Heather Yorks? My name is Samantha Parsons Hutton and in my fb profile photo I'm wearing a red cardigan & with my hubby. Hope that helps. Then I can bring you into the group.
Cheers Sam x

Hi Sam, I found you on FB but don't know what to do next. There didn't seem to be a place where I could add you as friend or send a message. My email is mhyork@optusnet.com.au if that helps. I sometimes get msgs from FB via email so perhaps my name and email is connected. My photo is me laughing with a red tshirt on. Heather

HI Kellie, I think I've found you too on FB. Perhaps you can invite me to join the group when Sam has asked you! I'm not too good on the whole social media thing! By the way your photo is fantastic! Heather

I found you Heather. You now have to accept friend request then Kell or I can add you to the group.
Cheers Sam x

Hi Kellie,

 I see that you are consulting with Dr Cooter. I have recently had other boob off (my choice) and had the double reconstruction. Dr Bill Mcleay did the first part of the sugery at St Andrews, Adelaide, then Dr Cooter stepped in.

 I went to Adelaide from Mount Gambier yesterday and had the bandages and stitches done. Somehow I thought they would look great the first day and so I fell in a hole when I looked and finally realised that my old boobs were gone. Over the past 18months I havent cried much but the floodgates opened yesterday and I cried on and off all the way home. Maybe I was just overwhelmed and tired.

Today the new boobs look much better and I expect each week they will heal and have less swelling. Dr Cooter said to put Hyperfix  tape on the scar and then use bio oil.

I have been really pleased with Dr Cooter and his staff but wish I had been reminded that all good things take time.

I hope the time goes quickly for you Kellie

Take care

ann

Hi Ann , just had a quick look and there is another lady who had used your doctor. My breast surgeon will be dr Steve Birrell from the utunga breast centre and my plastic surgeon is Dr Tim Proudman. They have worked together for 30 + yrs and Tims father taught Steve . I. Don't really know what to expect, at this stage I'm just worried about coping with the op itself.Its all very emotional isn't it?? How long ago did u have your op? The travelling is tough, I've got two young boys I've got to leave and my husband can't come either as my eldest son 8yrs is type 1 diabetic. So my poor mum has to come with me.how to u think they meaning your boobs will look in the end? Nice in a top but not that great in the flesh or can u see that in time they will look good? Hugs from Kell xxxxx

Ann I forgot to ask did they do a flap from somewhere or expanders ??

Hey Kel

I too live in rural SA (yorke peninsula) and my surgeons are Dr Birrell and Tim Proudman!! Perhaps we should try and meet one day?  I would be only too happy to show you my new boobs (lol!!) I am all finished now - including nipples and are only too happy to share my experiences.  My journey has gone really well. Really happy with both drs - plus my mum had Dr Birrell too.  Private message me if you like

Cheers

Liz

Hi Ann, I too see bill mcleay and rid coorer is doing my expander reconstruction in September! Thanks for posting about it being a bit of a let down to begin with. Rod has told me they won't be even to start with or looks the same but that they will get more even over time and that he'll do any tweaking that needs to be done. Your comments have reiterated what he has said to me, so I will be prepared hopefully for a few months of disappointment until they are good looking breasts!! Dr cooter seems lovely, bill could do with a better office manner but has a lovely bedside manner if you know what I mean!
Love to you
Sam xxx

Hi Girls, We seem to be all following each other, Chris is leading the herd . Thanks Chris for always giving great advice.

Kelli, I had tissue expanders on 14 Feb 2012. (My sons birthday). I had 2 expansions and then had them exchanged for implants on 30th May. Bandages off Friday. Sunday now and they dont look as awful. it was just a delayed shock I think.

 Interesting that you have a son with diabetes. I have a friend who is a BC liason lady, aged early 30's , 2 sons, one of which has diabetes. He would be same age as your son I think. Her name is Tracy Bald and she is on here and facebook. Fabulous lady who packs a lot into life. She had her breast cancer when she was inb her 20's.She would be great to talk too if you need help.

Sam, Thankyou so much for telling me what Dr Cooter said. He didnt tell me that bit, but then I was very anxious about the whole deal and may not have heard. My husband and I both liked Bill, straight to the point, and great by the bedside. He didnt charge me a gap both times he operated on me, but  we rewarded him with Johnny Walker Blue.

Im hoping that over time my boobs will be OK. I have put on 10 kilos in the last year (too much cake) and if I loose some of that the boobs will look better. Next on the agenda is to get fitter. As for nipples etc, maybe one day but I just need to get my head over this round.

Thanks so much girls, you have really helped me out

Ann

Hi girls :) firstly Liz I tried to private message you last week with my gmail address, I'm not sure if it worked but if you let me know that would be good.Ann I bet your glad your nearly finished? Can I ask is it what you didn't like about your recon. I'm guessing is it they are harder than b4 or the scars, shape? Do u think nipples will make you feel better once they r done? Unfortunately I had lovely boobs and now boob :/ so I'm hoping for a good result. The oly thing I've requested is to not have them as big as they were b4. I've gotta say my anxiety about the op is increasing and although I'm very busy, it's in the nights when I go to bed and start dreaming. When I woke that night I actually thought to myself I need to cancel the op. I just don't know, if I cancel I will be frustrated with myself but I can feel the tension in my body building . I guess it's because unlike the first op where u don't have a choice, this is by choice . And having to wake 16wks has been hard. I'm kind of back where I was just after my opbwhen I said I wouldn't b doing any of this again but yet here I am. I'm sure it will pass . Just got to keep breathing. Xx

I feel a bit the same Kellie. My op is booked for 11 sept so I too have a wait but I'm feeling anxious already and started worrying that maybe I shouldn't do the recon. I feel definite bout the prophylactic left mastectomy as I am worried bout it returning. But am not convinced I want the recon yet...ahhh, the worry is stressful. I hope you can recover some confidence about your surgery, let me know how you do if you achieve it!!
Love Sam xxx

Hi ladies, I can understand exactly what you are saying. I too felt that maybe I shouldn't be reconstructing, that maybe it was frivolous or a waste of money, as really I shoukd just be thankful that my cancer appears to be gone, blah blah and blah. Yes, we had no choices about the first op, so we just do what we need to do. Once there is a choice though, it becomes harder i took months to decide, but I am so glad that I did decide to go ahead with it. I knew the prophylactic mastectomy was the right way to go as soon as I had the second scare with the lump that was found on my check up ultrasound. The truth is, I just have trouble with decisions, all decisions. It has taken me 9 months to arrange a bathroom renovation, and forever to choose
anything. I am always worried that my choice will
be the wrong choice. My husband on the other hand makes decisions easily, and if they are wrong, he deals with them. If new boobs will make you feel better, then you should go with them, and be happy. You know, what an anaesthetic is like, and how it affects you, so that scarey bit is a known now. Even when I had to go back to theatre to have my blood clot drained, I surprises myself by not blaming myself for going ahead with this procedure. Now that everything is healed, this prophylactic side that had the blood clot looks really good, and even better than the other side. Love Chris xx

Hi Everyone,

I am nervous about my upcoming surgery too, but I have got to the point where I need to stop asking any more questions (I have been doing so for 6 months!) and just trust the surgeon. It is a lot of money and big recovery, but someone said to me early on (perhaps one of the nurses or a physio) that the reason women have reconstructive surgery is so that we don't need to think about our breasts any more. They go from being something you think about everytime u look in the mirror, decide what to wear, play sport etc back to being just 'there'! I think that's a great reason to go ahead with the surgery, think how much more brain space I will have to think of other much more wonderful things!

I've got three exams to do in the next two weeks, then a two week holiday in Vanuatu with my hubby (and no kids!). I'm going to enjoy myself and try not to think any more!

All the best, Heather

Thanks Chris and Heather. I appreciate your advice and agree wholeheartedly! I too need to stop wasting my time stressing about. Enjoy your trip heather and gd luck with your exams!
Xxx

Heather I like your way of thinking" more brain space" :) and Chris omg you sound juuuust like me and my husband is like yours. Opposites attract I guess. Have a great day girls.xxxx

WOW ladies,

Just read all your helpful posts.  I too am in the process of considering having my other breast off.  I have had radiation on my R side and a mastectomy.  I worry so much as I actually had a reoccurance on my right side 18mths after my lumpectomy, chemo, radiation.  SO the mastectomy followed.  Both my lumps were nearly 3cm and both were 8mths and then 6mths after clear mammagrams!!! Triple negative aggresive grade 3 tumours.  I really want my other breast off.  I too am a bit sick of high cut tops and wearing a prosthesis.  I am not brave enough to go flat chested.  I just want boobs, only small ones.

My general surgeon has suggested implants but I decided to get a second opinion and saw a plastic surgeon.  He will not do the implants due to my radiation.  I am not a big lady, however he seems to think I have enough skin on my tummy for 2x 12B's.  I will be happy with that.

He wants to do a tram flap.  WHen I asked him about a DIEP he said that he always aims to do one but often he makes his mind up about whether or not to take abdo muscle depending on the blood vessels he finds.

I also have lymphedema and so am not keen for the back muscle op, as there is a lot more arm pit involved and I worry about damage to my remaining lymph nodes...

Oh the worry of it all!! I am nearly 50 and think I will be getting a boob job for my 50th present LOL  I just need to work up the courage to say do it!!

Can't believe how therapeutic just writing all this down has been..

Thanks for anyone who reads this.  It is great to have a site like this to post to.

Cheers

Paula :)

Hi All,

Thanks for the posts they are all helpful. I am 33 I have had a breast lump removed in my left arm and 8 nodes removed, with clear margins and nothing found in the nodes, and had 3 FEC treatments and start Docetaxel in a few weeks.  I have not had genetic testing back yet. I am mostly decided on the double mastectomy  and reconstruction regardless of the genetic testing as this is as the doctors say the best option for it not coming back.

 Can anyone please tell me about the risks they were told about the mastectomy in relation to removing the tissue? As I understand this means more nodes taken.. One question that comes to mind now is what does this mean for having blood taken from my arms in the future because I was told I cannot have bloods taken from the surgery side for about 10 years to be safe! Does this include taking Blood pressure too??

so many things to think about!!

thanks

Little Red

Hi Paula,

What your plastic surgeon said about TRAM and DIEP sounds correct. I went to my plastic surgeon cos he's great at doing the DIEP and I wanted to keep all my muscle intact (including back). He tried for a DIEP but when I was under General, and he looked at the blood vessels, the best vessels to use involved him removing a small (about stamp sized) piece of rectus abdominus muscle, so I technically ended up with a TRAM. He replaced this with mesh. He was very aware of my desire to keep my muscle but he said his job was to ensure the flap had adequate blood supply, and if this involved muscle then so be it. I must say, I'm glad this was his priority.

I am six weeks post op and feeling great. I ended up having a TRAM for my left and a reduction of my right. They both look excllent and I'm enjoying my flat tummy!

Feel free to ask any other questions

Heather

Hi ladies found all these experiences invaluable. I will finish chemo soon genetics place me in a higher risk of reaccuance. Now I must decide whether to have a double mastectomy - I had BC in the left breast partial including nipple removal done then lymph nodes. The next step could be RT but that could damage my heart ribs and cause another type of cancer whereas if I have the double I can avoid the damage - limit ongoing medications and stop looking over my shoulder waiting for BC to strike again.
If I have a double with all breast tissue removed do I have just implants or do they -source- body fat/ tissue from ones tummy? How comfortable are implants ? How do they feel? I think you can see I don,t have much info yet - I will but nothing beets first hand experience - so if you ladies could share the pros and cons I would really appreciate it. I am 58 not vain but want a future fear free as best I can. Cheers lovely ladies